Gender, violence and cultures of silence: young women and paramilitary violence

Despite a growth in analysis of women and conflict, this has tended to overlook the specific experiences of young women. Likewise, in research on youth, conflict and peace, the term ‘youth’ is often short-hand for young men. Young women’s experiences are regularly absent from research and policy discourse, and as a consequence, also absent from public understanding and practice responses. In this paper, we prioritise the views of and on young women to forefront their experiences of one specific form of conflict-related violence – paramilitary violence. We demonstrate that forefronting young women’s experiences, and adopting an understanding of violence beyond that which privileges physical violence, unearths the multiple ways in which conflict-related violence is experienced. We further demonstrate how adopting an intersectional lens that prioritises age and gender can surface the specific experiences of young women, and the various ways in which these become silenced by cultures that omit, coerce, reduce and minimise

Health state utility data in Cystic Fibrosis: A systematic review

Introduction: Cystic fibrosis (CF) is a life-limiting, hereditable condition, with the highest prevalence in Europe. CF treatments have led to improvements in clinical symptoms, disease management and decelerated disease progression. However, little is known about the health state utility (HSU) associated with CF disease states, adverse events, and changes in disease severity. Although HSU data have contributed to existing health economic modelling studies, a lack of such data have been highlighted. This systematic review aims to provide a summary of HSU-related research in CF and highlight related research gaps. Methods: Online searches were performed in six databases and studies in any of the following categories were included: (1) estimation of HSUs in CF; (2) mapping studies between patient-reported outcome measures (PROMs) and HSUs; (3) economic evaluations on the management of CF that report primary HSU data; and (4) any CF clinical trial that reported HSU as an outcome. Results: A total of 17 studies were reviewed, of which 12 provided HSU values for specific CF populations. The remaining five articles provided HSU data that were broken down by CF relevant health states, including lung transplantations, pulmonary exacerbation (PEx) events and forced expiratory volume in 1 s (FEV 1). Conclusion: Current HSU data in CF are limited and there is considerable scope for further research, both in providing HSU values for CF and in investigating methods for HSU elicitation/evaluation in CF populations

Implementation of a Data Management Quality Management Framework at the Marine Institute, Ireland

Peer reviewed Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.The International Oceanographic Data and Information Exchange of UNESCO’s Intergovernmental Oceanographic Commission (IOC-IODE) released a quality management framework for its National Oceanographic Data Centre (NODC) network in 2013. This document is intended, amongst other goals, to provide a means of assistance for NODCs to establish organisational data management quality management systems. The IOC-IODE’s framework also promotes the accreditation of NODCs which have implemented a Data Management Quality Management Framework adhering to the guidelines laid out in the IOC-IODE’s framework. In its submission for IOCE-IODE accreditation, Ireland’s National Marine Data Centre (hosted by the Marine Institute) included a Data Management Quality Management model; a manual detailing this model and how it is implemented across the scientific and environmental data producing areas of the Marine Institute; and, at a more practical level, an implementation pack consisting of a number of templates to assist in the compilation of the documentation required by the model and the manual.This work is part supported by the Irish Government and the European Maritime & Fisheries Fund as part of the EMFF Operational Programme for 2014-2020

FURTHER STUDIES OF _ 5797.1 DIFFUSE INTERSTELLAR BAND

The $lambda$~5797.1 DIB is unique with its sharp central feature.footnote{T.H. Kerr, R.E. Hibbins, S.J. Fossey, J.R. Miles, P.J. Sarre, ApJ 495, 941 (1998)} We simulated the spectrum based on three premises: (1) Its carrier molecule is polar as concluded from the anomalous spectrum toward the star Herschel 36.footnote{T. Oka, D.E. Welty, S. Johnson, D.G. York, J. Dahlstrom, L.M. Hobbs, ApJ 773, 42 (2013)} (2) The central feature is Q-branch of a parallel band of a prolate top. (3) The radiative temperature of the environment is $T_r$ = 2.73 K. A comparison with observed spectrum indicated that the carrier contains 5-7 heavy atoms.footnote{J. Huang, T. Oka, Mol. Phys. J.P. Maier Special Issue in press.} To further strengthen this hypothesis, we have looked for vibronic satellites of the $lambda$~5797.1 DIB. Since its anomaly toward Her 36 was ascribed to the lengthening of bonds upon the electronic excitation, vibronic satellites involving stretch vibrations are expected. Among the 73 DIBs observed toward HD 183143 to the blue of 5797.1 AA, two DIBs, $lambda$~5545.1 and $lambda$~5494.2 stand out as highly correlated with $lambda$~5797.1 DIB. Their correlation coefficients 0.941 and 0.943, respectively, are not sufficiently high to establish the vibronic relation by themselves but can be explained as due to high uncertainties due to their weakness and their stellar blends. They are above the $lambda$~5797.1 DIB by 784.0 cm$^{-1}$ and 951.2 cm$^{-1}$, respectively, approximately expected for stretching vibrations. Another observations which may possibly be explained by our hypothesis is the emission at 5800 AA from the Red Rectangle Nebula called RR 5800.footnote{G.D. Schmidt, A.N. Witt, ApJ 383, 698 (1991)} Our analysis suggests that $lambda$~5797.1 DIB and RR 5800 are consistently explained as caused by the same molecule

Seasonal fluctuation of lung function in cystic fibrosis:A national register-based study in two northern European populations

Background Many risk factors for lung disease in cystic fibrosis (CF) display a seasonal pattern yet it is unclear whether this is reflected in seasonal fluctuations in lung function. Methods We conducted a longitudinal study using CF registries in Denmark and the UK. 485 individuals with a median of 103 FEV1 measurements per person and 7622 individuals with a median of nine FEV1 measures per person were included from Denmark and the UK respectively. We estimated the effect of seasonality on percent predicted FEV1 trajectories using mixed effects models whilst adjusting for clinically important covariates. Results We found no significant cyclical seasonal variation in lung function in either country. The maximum variation in percent predicted FEV1 around the yearly average was estimated to be 0.1 percentage points (95%CI 0 to 0.21) and 0.14 percentage points (95%CI 0 to 0.29) in Denmark and the UK, respectively. When considering possible step-like changes between the four seasons, we found that lung function was higher in spring compared to winter in the UK (0.34 percentage points, 95%CI 0.1 to 0.59) though the difference was not of clinical significance. Conclusion In both the UK and Denmark there may be small seasonal changes in lung function but this effect is not of clinical importance

Clinical features and management of children with primary ciliary dyskinesia in England

Objective In England, the National Health Service commissioned a National Management Service for children with primary ciliary dyskinesia (PCD). The aims of this study were to describe the health of children seen in this Service and compare lung function to children with cystic fibrosis (CF). Design Multi-centre service evaluation of the English National Management PCD Service. Setting Four nationally commissioned PCD centres in England. Patients 333 children with PCD reviewed in the Service in 2015; lung function data were also compared to 2970 children with CF. Results Median age at diagnosis for PCD was 2.6 years, significantly lower in children with situs inversus (1.0 vs 6.0 years, p<0.0001). Compared with national data from the CF Registry, mean (SD) %predicted FEV1 76.8% in PCD (n=240) and 85.0% in CF, and FEV1 was lower in children with PCD up to the age of 15 years. Approximately half of children had some hearing impairment, with 26% requiring hearing aids. Children with a lower BMI had lower FEV1 (p<0.001). One third of children had positive respiratory cultures at review, 54% of these grew Haemophilus influenzae. Conclusions We provide evidence that children with PCD in England have worse lung function than those with CF. Nutritional status should be considered in PCD management, as those with a lower BMI have significantly lower FEV1. Hearing impairment is common but seems to improve with age. Well designed and powered randomised controlled trials on management of PCD are needed to inform best clinical practice

Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis

Background: Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the association between different validated treatment burden measures. Methods: This is a cross-sectional observational study of CF adults attending a single large UK adult center. Participants completed an online survey that contained three different treatment burden scales; CF Questionnaire-Revised (CFQ-R) subscale, CF Quality of Life (CFQoL) subscale, and the generic multimorbidity treatment burden questionnaire (MTBQ). Results: Among 101 participants, the median reported treatment burden by the CFQ-R subscale was 55.5 (IQR 33.3 – 66.6), the CFQoL subscale was 66.6 (IQR 46.6 – 86.6), and the MTBQ reversed global score was 84.6 (IQR 73.1 – 92.3). No correlation was found between respondents’ demographic or clinical variables and treatment burden measured via any of the three measures. All treatment burden measures showed correlations against each other. More treatments were associated with high treatment burden as measured by the CFQ-R, CFQoL subscales, and the MTBQ. However, longer treatment time and more complex treatment plans were correlated with high treatment burden as measured by the CFQ-R and CFQoL subscales, but not with the MTBQ. Conclusions: Treatment burden is a substantial issue in CF. Currently, the only available way to evaluate it is with the CF-specific quality of life measure treatment burden subscales (CFQ-R and CFQoL); both indicated that treatment burden increases with more treatments, longer treatment time, and more complex treatments

Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis [version 1; peer review: 2 approved]

Background: Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the association between different validated treatment burden measures. Methods: This is a cross-sectional observational study of CF adults attending a single large UK adult center. Participants completed an online survey that contained three different treatment burden scales; CF Questionnaire-Revised (CFQ-R) subscale, CF Quality of Life (CFQoL) subscale, and the generic multimorbidity treatment burden questionnaire (MTBQ). Results: Among 101 participants, the median reported treatment burden by the CFQ-R subscale was 55.5 (IQR 33.3 – 66.6), the CFQoL subscale was 66.6 (IQR 46.6 – 86.6), and the MTBQ reversed global score was 84.6 (IQR 73.1 – 92.3). No correlation was found between respondents’ demographic or clinical variables and treatment burden measured via any of the three measures. All treatment burden measures showed correlations against each other. More treatments were associated with high treatment burden as measured by the CFQ-R, CFQoL subscales, and the MTBQ. However, longer treatment time and more complex treatment plans were correlated with high treatment burden as measured by the CFQ-R and CFQoL subscales, but not with the MTBQ. Conclusions: Treatment burden is a substantial issue in CF. Currently, the only available way to evaluate it is with the CF-specific quality of life measure treatment burden subscales (CFQ-R and CFQoL); both indicated that treatment burden increases with more treatments, longer treatment time, and more complex treatments